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The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…

Nearly half of all people with myasthenia gravis (MG) in Poland were admitted to a hospital a mean of two times in 2018, although not always for complications of their disease, a recent nationwide database study reported. Reasons for hospital stays included relevant treatments,…

It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.

Patients with well-controlled myasthenia gravis (MG) and no co-existing conditions, or comorbidities, are more likely to have milder COVID-19 and experience more favorable outcomes, according to a recent study. “Our study has shown that COVID-19 does not necessarily have a severe course or poor outcome in MG patients. Absence…

Lower levels of antibodies targeting acetylcholine receptors in the bloodstream of people with myasthenia gravis (MG) were associated with improved clinical status, a study demonstrated. These findings showed not only that antibody blood tests are useful for diagnosing MG, but also that repetitive testing may be “valuable as a…

COVID-19 infection prolongs the length of hospital stay by nearly twofold for patients with myasthenia gravis (MG), according to a U.S. database study. The study, “Impact of COVID-19 infection among myasthenia gravis patients- a Cerner Real-World Data study,” was published in the journal BMC Neurology. In MG, the…

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

Zilucoplan, UCB’s experimental therapy, safely and effectively eases symptom severity and improves the quality of life for adults with generalized myasthenia gravis (gMG), while helping them complete daily activities, according to top-line data from the Phase 3 RAISE clinical trial. Based on these findings, indicating the trial met its…

People with myasthenia gravis (MG) who lack or have subtle symptom fluctuations may face a delayed diagnosis of the neuromuscular condition, according to a recent case series. Given such cases, the researchers suggest that patients who show symptoms reminiscent of the autoimmune disease, even without fluctuations, should be…

The risk of myasthenia gravis (MG) worsening during pregnancy is about 34%, a new study estimates. Notably, most MG pregnancies end in vaginal delivery, and the risk of preterm birth is not increased in women with the neuromuscular condition, the study also indicates. “The current study allows the…